Director with ALS Fights to Finish Final Film

Oscar-nominated director Stacy Title's career was hitting a stride — then she was diagnosed with ALS. Now she’s determined to use the time she has left to focus on finishing her final film.

The Last End Credit

Jonathan Penner doesn’t know how long his wife, director Stacy Title has to live. But he’s helping ensure she spends their remaining time doing what she loves — making movies. Title was diagnosed with ALS, or amyotrophic lateral sclerosis, in December 2017. Title knows what she's up against: She's a person who can't talk and is not mobile in a job that demands communication. She plans to rehearse intensely. She is asking friends and former co-workers to pitch in. She'll use her husband as a mouthpiece.

In January 2017, Title directed the film The Bye Bye Man. It grossed over 3x its budget. The couple is raising money for Title to finish directing Walking Time Bomb — a dark comedy with actors Jason Alexander, Cary Elwes, and Bob Odenkirk attached to star. The project is moving forward through Title's sheer determination, even as she lies in recovery at L.A.'s Barlow Respiratory Hospital and Penner arranges permanent home care. She'll soon be using Tobii, a retina machine that will allow her to communicate via an electronic voice speaker.

Title first suspected something was amiss when in 2017 she tripped several times while walking on a sidewalk. Then there was the slight but recurring trembling of her speech. She feared ALS, though her doctors, even a neurologist, told her for months it must be something else. Her diagnosis came in December. Since his wife’s diagnosis, Penner has become an advocate for finding a cure for ALS — traveling to Washington, D.C. to lobby lawmakers for more research funding. Penner and Title, who are approaching 30 years of marriage, are refusing to take any moment for granted. The couple concludes with, “And there's nothing like the little things in life: laughter, and sex, and good food, and whatever it is that makes a human a human. Please enjoy them while you can.”